National Alzheimer’s Project Act update

December 23, 2013

Advisory Council considers brave new world of "big data"

“Big data”—the collection and analysis of large, complex data sets—is both a boon and a challenge to Alzheimer’s researchers, according to subject experts speaking at the Advisory Council on Alzheimer’s Research, Care, and Services meeting Dec. 2, 2013, on the NIH campus in Bethesda, MD. The quarterly meeting of the Council, which advises Health and Human Services (HHS) Secretary Kathleen Sebelius on the National Plan to Address Alzheimer’s Disease, heard about several initiatives focused on capturing, standardizing, and making freely available the massive amounts of DNA and imaging data now available due to advances in technology and how this new information can be integrated with other clinical data.

Dr. Arthur Toga, director of the Laboratory of Neuro Imaging, University of Southern California, Los Angeles, described how the amount and density of data collected from Alzheimer’s study volunteers—from brain imaging to neuropsychological tests—have outpaced the storage capabilities of researchers and research institutions. Additionally, the volume and complexity of the data make it difficult for researchers to process and visualize the data and to compare it across domains.

Toga described the Global Alzheimer’s Association Interactive Network (GAAIN), a new “global infrastructure” now nearing completion that would link data from multiple sources and enable a scientist to easily access and use vast, interlinked repositories of data on thousands of people with Alzheimer’s or at risk for developing the disorder.

“It’s a place to go to look up where data is stored. It provides a dynamic snapshot of what data live where,” Toga said.

Dr. Zavan Khachaturian, of the Prevent Alzheimer’s Disease 2020 campaign, discussed the need to work collaboratively towards building infrastructure to store data from the millions of volunteers he believes are crucially needed to develop cost-effective interventions for Alzheimer’s. Consultant Lynn Etheredge, a researcher and expert on cancer and other chronic disease health networks, described how biomedical research has benefited from large-scale databases and how Alzheimer’s-related databases might be integrated.

Other news from the meeting

The Council has several newly appointed nonfederal members: Dennis Moore, former Representative from the Third District of Kansas; Jennifer Mead, Oregon Department of Public Health; and Yanira Cruz, CEO, National Hispanic Council on Aging.

Donald Moulds, the point person on National Alzheimer’s Project Act (NAPA) activities for HHS, announced he is leaving his position as Acting Assistant Secretary for Planning and Evaluation at HHS. He was a key player in the development of the National Plan to Address Alzheimer’s Disease.

NIA Director Dr. Richard J. Hodes, who chairs the Council’s Federal Research Subgroup, announced that the first batch of genome sequence data from the Alzheimer’s Disease Sequencing Project (ADSP) is now available to researchers looking for genes that confer risk or protection. The ADSP, a collaboration between NIA and the National Human Genome Research Institute, is one of the first projects undertaken under the Obama administration’s intensified efforts regarding Alzheimer’s disease, funded as a result of additional funds allocated in fiscal 2012 for Alzheimer’s research, care, and services.

Members discussed the G8 dementia summit scheduled Dec. 10-11, 2013, in London. The G8 is a forum for the governments of eight of the world's largest national economies. NIH Director Francis Collins, along with NIA Director Dr. Hodes and others, were part of the official delegation to the Summit, serving on a panel discussing “Preventing and Delaying Dementia.”